Category: Nurse’s Corner

Nurse Explains Mesothelioma Treatment Decision Points Used at Brigham and Women’s Hospital

• Lisa Hyde-Barrett
• Nurse's Corner

Deciding which path to choose in the treatment of mesothelioma can be confusing and overwhelming. The available options are often individualized and tailored to the patient based on the stage of the disease, lymph node involvement, and the patient’s functional status. Using this information and the patient’s desires, the mesothelioma team and the patient will work together to determine the best plan for the patient.

Some questions for the patient to ask him/herself include: Is the chance of living longer worth going through surgery, chemotherapy, and more tests? How do I make a decision when the stakes are so high? Do I understand all the options presented by my oncologist?

Dr. Raphael Bueno, Director of the International Mesothelioma Program, Brigham and Women’s Hospital, talks about three factors that he and his team, and the patient, consider when deciding on a treatment plan for mesothelioma.

Dr. Bueno’s first step is to determine how advanced the cancer is. Is it actually mesothelioma? Is the mesothelioma localized or has it spread to the lymph nodes? Is it amenable to surgery? Is chemotherapy a better option than surgery? These questions emphasize why it is so important to go to a treatment center with mesothelioma experts. They can give you the benefit of their experience in treating patients with mesothelioma that other less experienced teams cannot.

The second factor that Dr. Bueno uses is the patient’s physical condition. Functional status is the term used to describe what the patient is able to do to meet their daily needs, fulfill usual roles, and maintain health and well-being. Is the patient debilitated? Can he/she walk or are they bed bound?

The third factor is, “What does the patient want?” This is where you have to look deep inside yourself and ask yourself, “Is this what I want?” Do you want to turn over every stone and fight aggressively? Is what you are  feeling the right path for you?

This is a brief, simplified outline of a very involved multidisciplinary process involving many experts. However, I hope that it does give you some questions to contemplate, and shows you that your mesothelioma treatment is not dictated by the medical team but is a collaborative decision.

The decisions that go into determining your mesothelioma treatment plan are not easy, but support is available. Remember that progress is being made, and there is hope!

If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].

Mesothelioma Nurse Suggests Reading Book That Addresses Mortality

• Lisa Hyde-Barrett
• Nurse's Corner, Uncategorized

When diagnosed with mesothelioma, or any life-threatening illness, it compels the patient, family and contemporaries to face our own mortality. The fact that we are all going to die is something we all know, but no one wants to deal with it. How many of us do not have a will or have not done any estate planning? What will death look like for us? Will we be in pain? Alone? Broke? What matters?

On October 7, “Being Mortal: Medicine and What Matters in the End,” by Dr. Atul Gawande, will be released. Dr. Gawande is a New York Times best-selling author and a talented, practicing surgeon at Brigham and Women’s Hospital in Boston, Massachusetts.

Below is an excerpt of the overview of the book:

“Medicine has triumphed in a modern time, transforming birth, injury and infectious disease from harrowing to manageable. But in the inevitable condition of aging and death the goals of medicine seem too frequently to run counter to the interest of the human spirit. Nursing homes, preoccupied with safety, pin patients into railed beds and wheelchairs. Hospitals isolate the dying; checking for vital signs long after the goals of care have become moot. Doctors committed to extending life, continue to carry out devastating procedures that in the end extend suffering.”

Hopefully, this book will open up conversations and actions that will lead to exploring our fears about death and continuing life after there is quality that we do  not want.

For mesothelioma victims, the importance of palliative care experts on your team is again emphasized. From the time of diagnosis through the journey of mesothelioma treatments, quality of life issues, and being pain free, palliative care specialists strive to meet the patients’ needs.

Being aggressive with mesothelioma medical treatment is what is encouraged.  However, a good quality of life is the goal.

Being Mortal:Medicine and What Matters in the End is available through Amazon.

If you have questions about your mesothelioma treatment, palliative care, or any aspect of your mesothelioma care, please email me at [email protected].

Listening Skills Are Important for Mesothelioma Patients

• Lisa Hyde-Barrett
• Nurse's Corner, Uncategorized

“What did you say?” is one of the most common phrases used today. Sometimes it is because you cannot hear someone, and sometimes it is because you are not listening to what is being said. Recently when talking with a mesothelioma patient it was apparent that she was distracted and not focused on our conversation. Clearly, she had other things going on in her head.

Mesothelioma is a life crisis, and proper communication is key to developing a care plan that is right for the patient and family. It is important for patients and their family to develop effective communication skills and to listen closely when working with the medical team. Effective listening is the primary component in effective communication.

Listening is a skill that people can work on in order to improve. It is a skill we actively use every day and we can improve on with practice. We process words at a rate of 400-500 per minute and speak at a rate of 135-175 words a minute, making listening a skill that needs concentration and practice.

The dictionary defines the verb ‘hear’ as: to perceive by the ear, as to hear sounds, to hear voices. Listen, the verb, is defined as “to give attention with the ear, attend closely for the purpose of hearing, to pay attention, heed.” Basically, listening is the ability to interpret.

Communication involves hearing and active listening. A study that was published in 1993 by Alessandra and Hunsaker states that, on average, most people retain only 25% of what they hear. That means 75% is forgotten, distorted, or simply misunderstood.

So how do we become better listeners? Some tips frequently noted are: remove distractions; focus on what is being said; be unselfconscious, that is having the ability to stop thinking about yourself during the conversation; be empathetic or find common ground with whomever you’re talking with.

When you and your loved one are working with your mesothelioma care team, listening skills are critical to ensure all issues are addressed and care is administered properly. Listening goes both ways. If you do not feel your doctor or team has heard your concerns, make sure to state them again and again until you are comfortable you have the information needed to move on. And be patient if the doctors do the same thing to you – it is just as important that they feel heard as well.

Caregivers Should Be Cautious for Mesothelioma Patients’ Depression

• Lisa Hyde-Barrett
• Nurse's Corner, Uncategorized

The average age of a mesothelioma patient is 72 when diagnosed. Although depression is not necessarily part of the aging process or with battling cancer, it is not uncommon for mesothelioma patients to struggle with depression. It is also not uncommon for depression to be overlooked or ignored. However, it is vital for caregivers to recognize symptoms of depression and to encourage their loved ones to get help from their doctors.

John is a 74-year-old man who was diagnosed with mesothelioma in January of this year. He underwent chemotherapy pre-op, and with his supportive family with him, he underwent a partial pleurectomy in June. He did well physically with just a few complications. When he returned home he seemed to be doing well, but he was depressed.

His wife of 45 years recognized the symptoms and contacted his care team who quickly started him on an antidepressant. Although it can take up to six weeks for the medication to become effective, John responded well and was quickly feeling better and has started to enjoy life again.

What were  the symptoms that John’s wife recognized? What are the symptoms of depression? Who suffers from depression? According to the National Institute of Mental Health, the symptoms of depression are:

• Persistent sad, anxious, or “empty” feelings;
• Feelings of hopelessness or pessimism;
• Feelings of guilt, worthlessness, or helplessness;
• Irritability, restlessness;
• Loss of interest in activities or hobbies once pleasurable, including sex;
• Fatigue and decreased energy;
• Difficulty concentrating, remembering details, and making decisions;
• Insomnia, early morning wakefulness, or excessive sleeping;
• Overeating or appetite loss;
• Thoughts of suicide, suicide attempts;
• Aches or pains, headaches, cramps, or digestive problems that do not ease, even with treatment.

Depression is likely caused by a combination of personal, environmental, and circumstantial factors. Cancer doesn’t directly cause depression, but one in four patients with cancer are clinically depressed.

The American Cancer Society website has a thorough explanation of cancer and depression. One point that is made is that people who have depression, along with other medical illness, tend to have more severe symptoms of both depression and their medical illness. They have more trouble adapting to their medical condition, and more medical costs than those who do not have co-existing depression.

In John’s situation, he was lucky that his wife was aware of the symptoms of depression and encouraged him to seek treatment. She knew that her husband was suffering. Depression can be treated, it is real. Help is available for both the patient and the caregivers to deal with the impact on the patient and family.

To read more about depression and cancer visit the National Institutes of Health or the American Cancer Society.

Consider reaching out to a mesothelioma support group. They are available through the Mesothelioma Applied Research Foundation.

If you have questions about your mesothelioma treatment or any aspect of your mesothelioma care, please email me at [email protected].

Mesothelioma Nurse Alerts Patients and Families About Issues From Cachexia

• Lisa Hyde-Barrett
• Nurse's Corner, Uncategorized

Have you ever noticed that a friend or family member will get diagnosed with mesothelioma or a different kind of cancer, and will be going along fine for a while then suddenly start to lose weight? This is actually a wasting syndrome called cachexia. Cachexia is defined by the American Cancer Society as “a profound state of general poor health and malnutrition – poor food intake – and/or poor food absorption.”

This syndrome affects more than half of all  cancer patients and kills nearly 20 percent of them before the cancer can. It is characterized by muscle wasting, weight loss and protein degradation. This syndrome is not limited to cancer; it also affects patients with chronic illness. Doctors do not know what starts the syndrome or how to reverse it, but there is promising research to bring relief to the patients.

What starts cachexia? The research is focusing on molecular causes of this disease. The hope is that this will lead to more advanced treatments. One theory is that cachexia causes white fat cells, that store calories in the body, to turn into fat-burning brown cells that release heat – thus, burning calories. Cachexia is often a sign that the chronic illness that a patient has been battling is  terminal.

Regardless of what turns the syndrome on, the effects leave the patient unable to receive additional treatment for their underlying condition. It is difficult for families and friends to see the patient exhausted and unable to enjoy the things that they used to. It affects all aspects of their lives.

As mesothelioma moves into a chronic disease, it is important to keep an eye on your loved one’s weight, and energy level. If they start losing weight, and are more tired than usual, make sure that you let the patient’s medical team know.

There were two studies published this month about cachexia – in the journal Nature and the journal Cell Metabolism. Also, a July 28 article by Yasmeen Abutaleb in the Boston Globe has an excellent explanation of the devastating physical and psychological effects cachexia has on patients and families.